Patient and relatives/carers experiences
We feature here the experiences of real MDS patients and their families and carers. They have been willing to share with us their stories and photos, in the hope that fellow patients will find it helpful to read how they have learned to live with MDS.
Readers who don’t know much about MDS will hopefully gain a better understanding of this complex disease by reading these patients' stories.
Please do send us your contribution – whether you are a patient, family member or friend:
Email it to email@example.com or call to our main office Tel: 020 7733 7558.
You may talk about any aspect of the condition, or how your experience has affected or changed you. Feel free to add photos as well.
Thank you in advance!
You are also invited to join our forum, a lively community of MDS patients sharing their own experiences and questions.
In 2017 at the age of 38, I was diagnosed with Familial MDS. It came as a bit of shock and took me a while to get my head around it, but my journey to this diagnosis started many years prior to this. My mum died when I was 5 years of age of Tuberculosis […]Read full post
In 2015 I walked into a consultants room expecting some new prescription or the ‘we don’t know’ I had been hearing for past seven years. But this appointment was different. That day I would finally get a diagnosis and even though it was shocking and terrifying a sense of relief was there as finally I […]Read full post
Emma was diagnosed with MDS in August this year, which came as a bit of shock. She has been unwell for a few years, and has been sent to the haematology department annually for 4 years. We went to the results appointment expecting to be sent home with a flea in our ears again. But […]Read full post
In 2010 I had the last of three bone marrow transplants to treat my MDS. Quite a few things have happened since then! From climbing stairs without a feeling of overwhelming fatigue to going back to work For me, a major milestone after my diagnosis was simply being able to climb stairs and dress myself […]Read full post
In mid 2007 I began to feel really exhausted and unwell, I had been working long hours in a stressful job as a senior officer in the fire service, we were in the midst of moving house and my wife was in the late stages of pregnancy, so I thought it was just stress. Shortly […]Read full post
By Blerina Ahmetaj-Shala. Imagine hearing the news – you father in law, a young, fit and seemingly healthy person has MDS. What was MDS though? I had never heard of it despite working in science myself, and living in the UK. All diseases or illnesses are ‘inconvenient’ but this discovery really did come at a […]Read full post
Following is an article by our friend and long-term MDS patient advocate from Germany, Bergit Kuhle. Bergit, together with Anita Waldmann, runs an MDS Patient Group in Germany, and both are founding members of the international MDS Alliance – the umbrella organisation for all national patient groups in the world. Our organism does not have […]Read full post
“I hope and trust that my little story would encourage other MDS sufferers to decide to go through with the treatment. It was proved that even patients who are more than 60 yrs. old can benefit from Bone Marrow Transplant. The reduced regime used to treat me has been quite successful. It is not as stressful […]Read full post
Reginald Hall’s story is an uplifting one. Reginald is an MDS patient who has been a member of MDS UK Patient Support group for quite some time. Lately we received a couple of letters from him and he allowed us to share them with our members on the website. We received Reginald’s first letter on […]Read full post
Suzie was 5 years old when she became unwell. She developed a really high temperature and chesty cough so we thought it was just a normal childhood virus. We presented her to out local GP and he prescribed antibiotics. However, she continued to spike high temperatures so we took her back to the GP I […]Read full post
Evie McClean is a young member of the MDS UK Patient Support Group. In July 2014, when she was 8 years old, Evie was diagnosed with leukemia. After 4 months of chemo she had 6 month of remission, but then she became ill again. In July 2015 she was diagnosed with MDS and bravely endured […]Read full post
I first visited my GP in March 2014 with the symptoms of a condition which was eventually diagnosed as Sideroblastic Anaemia. I was 59 years old, still working full time as a Chartered Accountant, and enjoying a life without any responsibility except for work and home. The Haematology Clinic at the PRU and the Supportive […]Read full post
Sachyio lives in the UK. Her Mum has MDS, but lives in Japan. A few of our members have family far away, and when travel is particularly difficult or expensive it gets really hard. So this is the contribution of one daughter – helping her Mum cope with MDS and helping to raise awareness internationally. […]Read full post
Back in August 2015 I was noticing how tired I was. I would sit down in the evening feeling totally exhausted and then castigate myself mentally that I hadn’t accomplished everything I had planned to do. Was there something wrong with me? First symptoms… Am I old and fat? I had reacted badly to a […]Read full post
My MDS story unusually starts some years before diagnosis. In about 2006 or thereabouts, my sister was diagnosed with MDS. Despite the very best of care and specialist treatment at King’s in London, her condition became AML and she sadly died in 2011, aged just 57. During her illness I became all too familiar with […]Read full post
I have been fighting blood cancer for 12 years, and I have been fighting it hard. I have taken every opportunity given to me to treat it and live my life to the fullest. When my MDS relapsed and showed signs of progression to AML in July 2015 I was shocked to find out that […]Read full post
Brenda’s MDS was diagnosed in 2008. For six years she was in a “wait and watch” period; having regular three month blood tests and an annual bone marrow test. MDS did not stop her from living a full and busy life. In 2016 she suffered from severe pneumonia and a bone marrow test revealed that […]Read full post
“I was in my early 30’s when I was diagnosed with MDS 5q- when there was very little to offer in the treatment of MDS other than supportive care, or bone marrow transplants. “ Fiona is an MDS del 5q patient, and is being treated with lenalidomide. I was in my early 30’s when I […]Read full post
Christina was diagnosed in 2009 with MDS/RARS at her local hospital in West Sussex by Dr Narat and has been treated at Kings since 2011. Read Christina’s story and her helpful TIPS TO STAY POSITIVE WITH MDS. First I asked “Why me?” then started to make adjustments I was diagnosed in 2009 with MDS/RARS at […]Read full post
Jayne writes about her MDS diagnosis and treatments leading up to her stem cell transplant in July 2012.This article was published in the MDS UK Newsletter 3 and 4 – in January 2013 – and Sept 2013.”I lived 42 years with my original blood and immune system; the plan is to live 42 years with […]Read full post
Secondary MDS (following breast cancer) – with chromosome 11q deletion Diagnosed 2010 – age 67. Watch and Wait/Watch and Monitor “I have never met anyone else with M.D.S. but would love to hear from anyone with similar experiences. Unfortunately I am a techno-dinosaur, but Sophie has my address.” Watch and Wait/Watch and MonitorI was diagnosed […]Read full post
Daisy, diagnosed as a teenager, is one of the uncommonly occurring cases of MDS in young people. Although Daisy was successfully treated with Bone Marrow Transplant few years ago, her journey with cancer hasn’t ended there. She decided to use her experience for the benefit of other young people suffering from cancer in UK and […]Read full post
Anthony, diagnosed with high-risk MDS and is currently being treated with Azacitidine. His route to diagnosis wasn’t a straightforward one and required a deal of determination and perseverance on his behalf to find the cause of the symptoms with which he was struggling for some time. Sadly, this also had an knock-on effect on his […]Read full post
Rodney was diagnosed with MDS at the age of 64. Within a couple of years, his symptom-free illness, at first, progressed to a hugely debilitating condition. Having entered a clinical trial of a promising drug treatment with azacitidine, Rodney was eventually freed from fatigue and transfusions for 4,5 long years, and decided to actively campaign […]Read full post
Andrea diagnosed with MDS RAEB-t type at the age of 29 was treated with bone marrow transplant in 1994, but relapsed a year later. With 5% chance of success, she was advised against the second transplant. Following a gruesome period of intensive chemotherapy treatment, she fought to have a last-chance treatment called donor lymphocyte infusion […]Read full post
This is the contribution from a loving daughter, who looked after her Mum. This was written to help other family members or patients to prepare themselves when it is established that nothing else can be done – or if a patient has decided they do not wish to undergo any further treatment.It is written in […]Read full post